Tuesday, June 23, 2009

Bad Days Can Get Worse

Ours did.

We were ALMOST out of the woods. Here is how the day went.

This morning was full of lots of upset time for Ryan. So upset, that he dropped his O2 sat on me (here by myself) and I was flailing to know what to do. Do I move him? Suction? Call Chris? Call Wings? Is this it????

Finally, I was able to get his oxygen sat back up with lots of position changing and turning his oxygen up. I called Chris immediately and got the ball rolling. I knew, Ryan needed to be seen today. His secretions had been much thicker the last 2 days and with all of the other things that had gone on, my intuition said that we needed to know what was up. I talked to the Wing's nurses and to the pulmonologists office and we all agreed that we would bring Ryan to the ER at Children's for a chest x-ray and to try out the cough assist machine and see if Ryan tolerated it (to help him clear his secretions). We knew that use of this machine is controversial as we have heard it is unpleasant. But, as parents, we have to do unpleasant things for our children all the time for their own good. Chris and I felt it was necessary to see for ourselves and at least have the option to use it if desired. Without it, we have no way to help Ryan if he gets a "mucous plug" other than suctioning his mouth. With this machine, we can similate a cough and help him clear his lungs. We hope to help prevent illness, but will not be able to fix everything, and we know this.

On the way to the ER, we had to make the decision to fore-go the safety of the car seat and just place Ryan in the seat on his side next to me. As unsafe as this sounds, it is equally unsafe for him to be in it since he could not breathe.

So, while in the ER, the chest x-ray actually looked better than it did 3 weeks ago when we saw the pulmonologist in the office, however, there were 2 suspicious areas in the films. Ryan did not have a fever, but Dr. Kemp wanted to treat him with antibiotics prophylactically anyway. Ryan did fairly well while we were there and was alert and happy some of the time. He also tolerated the cough machine pretty well and we should be receiving one in our household to use when needed, sometime this week. (The only way we could have gotten one was to be seen, and it just so happens that we had to go to the hospital anyway. One might say it was good timing).

We left the hospital fairly quickly and got Ryan in the car and situated. He layed in the seat next to me on the way home again, content and drifting off to sleep some. We dropped off a prescription, grabbed some food, and we were almost home when we began to notice Ryan was getting fussy. We realized his O2 tank had just run out (5 min from home) and I scrambled to get the next hooked up. I had him situated as we were pulling into the driveway and we waited to move him inside until his O2 sats returned to normal.

And then, I layed my hands on him. Immediately, I knew he had a fever. We rushed him inside to his room and I ran for the thermometer. 101.9!!! Wondering "What just happened??!!" He was fine at the hospital and now his heartrate was over 200 and he was working so hard. First, we gave him tylenol and I called Wings again (thank you Wings for being so accountable). I got the go ahead for Motrin (Ryan's miracle drug, if you remember from our other hospitalization) and some Ativan to help calm him. We were waiting for the prescription to be picked up and as soon as it arrived, we gave it too. Ryan was able to calm himself down after about 1/2 an hour and his temp has come down. Goes to show that the areas of suspicion on his chest x-ray are worthy of treatment and that his Mommy's suspicion that something was wrong was right on, AGAIN!

I knew this morning and by all that had gone on the past few days that things weren't right. We were falsely reassured when his chest x-ray came back better than last time. Always, always trust your instinct. Mine has NEVER let me down.

Please pray for Ryan to recover from this illness quickly. Pray that modern medicine helps him fight off the pneumonia in his lungs and keeps him as comfortable as possible. Pray that this bad day doesn't get any worse... it is not over yet.

6 comments:

I am thinking of you and your family and hoping and wishing that your beautiful son recovers quickly from the pneumonia so that you may all have some more happy memories together.

I saw one of your posts on Gwendolyn Strong's website and decided to check out your blog. I was sent to Gwendolyn's blog because a family in our community has just recently lost their little girl Georgia to SMA and I am now somehow emotionally invested in this disease and the families it so cruelly devastates. My heart breaks for you and your family, as it does for all families affected by SMA.

I have no words to ease your suffering, only my wish for your continued strength as you live through this difficult time.

As you said, procedures you choose may be controversial, or people may question your actions, but you are Ryan's parents and protectors. You will make the right decisions for him because every decision you do make will be made with greatest love. He is such a handsome baby and has such expressive, "old-soul" eyes (incidentally, so did Georgia).

Please know that you, and Ryan, are thought of by many people and are not alone.

I'm so sorry to hear about your hard day. I hope that the antibiotics do the trick and Ryan doesn't develop pneumonia. God has blessed Ryan with such a wonderful mom and dad, perfect parents for him to have. I'm sure Ryan feels your love even if he is still too young to really return and express that love back.

I wish that I had more words of encouragement as you continue down this difficult road. I know you know that God is with you and holding you and Ryan as he fights this disease. May He bless each moment you have with your son and may you feel at peace with each day.

I know we haven't met and I hope that you don't feel that I've overstepped with my post. You are in our prayers; you, Ryan, your whole family.

Just checking in again. We really did get used to the cough machine and whenever Cole would struggle that was the first thing we would try. We ended up using it regulary 2 times a day for him.

Praying that he kicks this illness quickly.

One other thing, do you give him nebulizer treatments? It can help loosen up the secretions, even if it's just with regular saline. We would use xoponex before coughing, but when he was sick we would just blow saline at him in a blow by treatment.